Friday, April 28, 2017

Biting My Tongue (Or Letting Others Learn By Themselves)

At one's first cancer diagnosis, you are welcomed shoved into Cancerland, where no one wants to be. You learn about your cancer and probably a fair bit about cancer in general. Eventually you go on to learn more about cancer than you ever cared to know.

You get to the point where you can talk about cancer and its treatment and have a general idea of cancer treatment hell. You also understand staging and what different stages mean. You never wanted to know all this but you do and you can't deny it.

Then someone else you know is diagnosed with cancer. Do you tell them everything you know about cancer? Or, do you bite your tongue and let them learn at their own pace?

I feel strongly about biting my tongue and keeping quiet on this. If someone asks questions, I'll help them with answers but I know I am not a doctor (just a professional patient) so I can't really give advice anyway, except to say 'step away from Dr. Google'.

Part of the trauma of a cancer diagnosis is the giant pile of decisions you need to make. You have to learn a lot of information so you can make informed decisions. I learned that I needed to learn in chunks. When I was facing surgery, what were the surgical options? Then when chemo came along, a new set of decisions. And so forth. I couldn't face any more information at one time.

Also, every cancer is different and everyone's cancer is different even if the diagnosis is the same. I can't make assumptions about someone else's cancer. Nor can I force my knowledge on them. They need to start with their doctor, their prognosis, and their decisions.

The same goes for caregivers. They need to learn as they go along. If they are providing care, ie being a caregiver, they need to get on that bus to Cancerland with the patient and help them as much as they can. If they aren't helping the patient, they are not a caregiver and can go back to whatever they were doing.

A trip to Cancerland should be viewed as a journey of 10 million steps (put that in your pedometer and you are done for the decade) which comes with its own dictionary and encyclopedia and staff of 10,000 providers that you have to decipher. You need a caregiver to hold you hand as you go along and help with all the research and emotional support - even if it comes down to bringing a barf bag after chemo. You can learn together. But call me with any questions and I'll try to help.

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